Parsonage turner syndrome *

If my hands get the least bit cold the joints ache so bad. If my hands get warm they feel like they have been scalded with boiling oil.

I'm a bit confused as to why you cannot get another opinion. I am not a doctor, but I have been through enough with PTS to at least appreciate there is a range of symptoms. Yours seems well outside the range of anything that any of the neurologists ever discussed.

My husband has been dealing with Brachial Plexus neuropathy for over a year and yesterday was the first time we've heard of Parsonage-Turner Syndrome from our physician at USF in Tampa. What do you know about this syndrome - what can be done for it - where is the best place to receive treatment for this rare disease?

Hi Arlene, welcome to Connect. I moved your message to an existing discussion group about Parsonage Turner Syndrome so that you can meet others who are sharing their experiences with this condition and where they are treated. Click VIEW & REPLY at the bottom of the email notification to go to the discussion and read the past messages, where you'll get to meet @andylevine @confused1955 and @adriennes.
@johnbishop also shares this great resource about PTS to get you started in your quest for more information
The National Organizations for Rare Disorders: https://rarediseases.org/rare-diseases/parsonage-turner-syndrome/
Mayo Clinic: http://www.mayoclinic.org/diseases-conditions/brachial-plexus-injury/symptoms-causes/dxc-20127374

Did you doctor at USF recommend a specialist in the area?

No, she did not even mention any specialists in the area. She referred to another doctor at USF for a second opinion - his first available appointment is July 5th. Can you recommend someone in our area? Please and Thank You.

Hi. I cannot recommend a doctor in particular for you. Frankly, in my experience there is very little knowledge on this condition beyond just diagnosis and a shoulder shrug. I found that the best relief I obtained was through physical therapy to try to restore the lost strength in my arm. In truth I'm not sure it helps expedite the recovery, but it did strengthen muscles around my de-nerved muscles, and gave me the sense of doing something about this rather than sitting idly waiting for it to resolve itself. However, what actually happened with me, and something you should look into, was that I had something called a Thymoma. In my case it was malignant, but that is not always the case. Its a growth on the thymus gland, and at University of Pennsylvania what they believe happened was that the thymoma was causing the thymus to secrete defective T-Cells, which are immune cells originally produced by the thymus during childhood and early adolescence. Once my thymoma was removed the T-Cells which had been attacking my brachial plexus nerve stopped, and my pain and weakness resolved very quickly after that. I would suggest speaking to a top neurologist in your area just to confirm PTS, and then I'd have an image taken of the chest to see if they can see any issues with the thymus (which is how they discovered my condition).

Thank you for your information regarding the Thymoma. Mark has had numerous MRI's and CAT scans and nothing shows any tumors or suspicious shadows, etc.
As a result of inactivity, he has developed blood clots in his arm and is now on Eliquis (blood thinner). Do to the swelling in his arm and hand, PT is not an option at this time. But he does daily exercises to maintain some ROM in his right arm. We go for a new ultrasound end of February to check on the clots.
Also working with a pain management doctor to contain the pain. A once a month visit to renew prescriptions.
It's just SO frustrating to have no known cause, no diagnostic testing, no definite timeline for it to run its course or how complete a person's recovery may be.
I appreciate finding this Group and am sure we can learn a lot and hopefully, help someone else.

The diagnostic test was an EMG. It was a horribly painful test. Definitely not worth it.

I have PTS, I was blessed to be diagnosed 2 1/2 months into it, though it is the most painful experience in my life. I live in the Chicago area and this is so uncommon i have had a hard time finding any info or even neurologists who have treated more than one person. I have the rarer nerves in my arm involved and cannot find a dr who has ever treated a woman with this. Anyway, it slowly improves, sleep when you can, positioning, heat, tens unit, exercise, all help. I still take occasional pain meds, but time heals, slow, slow, so hang in there, sleep sitting in a recliner, only way for a long while. Ive been ill with it 16 months, still have severe denervation, no strength, but i do pilates 3 days a week to keep. Strength,

Oh yes, I had 2 EMGs the neurologist I went to after diagnosis couldn't believe the first readings so I endured a second one his colleague performed, you are so right, absolutely not worth it.